Mea culpa, mea culpa

IMG_1317

Periodically it seems, I feel to need to apologize to readers for letting the blog lapse.  It was certainly easier to keep up before I went back to work.  Back then it was the only release from the pent-up need to give back, to use the experience of my illness to try to make a difference.

Now, of course, I spend time with cancer survivors and their families five days a week.  Not only is there less time but the need has been satisfied.  That is no excuse.  I started this blog and I should keep it up.  I still get traffic, even without fresh content.  For a long time the value of this site has been about it being a repository of like souls, suffering and finding truth together.

New Year’s traditionally the time to resolve to do better.  And so I do so resolve.  I set up a new look last January and am satisfied with the look and function of the new software.  However, I did get plagued with hundreds of people per month signing up as members of the community.  But 95% of new members were bogus.  I could never tell what their intentions were.  Never did any of these faux survivors attempt to make comments on a post, solicitous or otherwise.  For some reason there must have been value in just getting their email address up on my site.  Some addresses suggested some sort of selling business.  Others were from Russia – suffix “ru”.  The suspects in the Target intrusion were allegedly from there.  I set up different CAPTCHA tools to prevent “bots” from breaking in.  But these phantoms keep coming dozens per day.  A number of you have written asking for help registering.  I will research the WordPress site and try to open the site up again.  I can always be reached via email though, again, I have been lax in that.

This week brings sub-zero weather back to the heartland.  So I plan to spend some time cleaning up the computer and bringing the blog up to date.  If you know of any new cancer blogs, please pass the information on to me.  Trolling the net for new sites takes a lot of time.

I have been developing some ideas about how people affected by cancer deal with their disease, and especially what role information about cancer informs that experience.  So I will be asking you all for feedback.  In the meantime,

Take care, Dennis

Share

Cancer Diary from Britain – guest post

Here is another offering from my inbox.  Shelly is a survivor of inflammatory breast cancer.  Her professional life has been involved with facilitation and health issues.  Many of her posts deal with issues outside of her cancer experience though its mark is always in the background.  Her sense of humor shines throughout.

Take care, Dennis

NED’s diary

I think I am in recovery. I have finished most of my active treatment for cancer (Inflammatory breast cancer, for those of you who haven’t read before) and I’m just receiving an infusion of Herceptin every 3 weeks. So same old chemotherapy suite, slightly different drug cocktail. Before treatment even began, I was skimming through breast cancer forums looking for reassurance/information/salvation and I saw people referring to vodka, gin, whisky etc. In my innocence, I wondered whether the treatment had to be accompanied by alcohol in order for it to work properly. In my defence, your honour, they were very confusing days.

People don’t tend to say ‘you no longer have cancer’ any more, in my experience. Whether it’s because of the rise in litigation or simply because they are being honest and realistic, I don’t know, but I had to mentally arm wrestle my breast care nurse into admitting there was no evidence of disease. NED. It’s about as good as it gets, I believe.

It’s at this point we are encouraged to start making something of a normal life for ourselves again. That’s a strange thought in itself as life will never be the same again, as it isn’t after any of the millions of miniscule changes which happen in our ordinary lives, but in this case, the change feels pretty mega. For some of the time, I feel the same as before but then there is a shift, a timeslip, a crack in my emotional pavement and it’s all different. As you will appreciate, it’s hard to explain.

Recovery is all about having fun, enjoying ourselves and re-connecting where possible. It’s also about rest, rest and more rest. It’s a bit hard to know how to balance it. Exhaustion is a daily word. I am fed up with the word ‘tired’. It doesn’t convey the overwhelming feeling that pins me to the sofa sometimes. I am fed up with the word ‘pain’, too. I don’t know why I have lots of pain in different places and I don’t know what else to call it. I don’t know why my feet hurt so much, and my knees, when I’ve just got out of bed. I don’t know why my hands ache, or my back, or my head. It’s all related to the big C, I guess. Or something else. Who knows? It’s just a pain in every sense.

So, what does a recovery diary look like? I imagined well defined hedges of rest interspersed with flowery beds of activity and the occasional fallow plot for really deep relaxation. No. It’s packed. I feel like I am fully employed with recovery. You might imagine hospital appointments would be few and far between now. My diary is crammed with pieces of paper relating to appointments. It looks like I have a hectic work life. There are appointments for prosthesis fitting, sleeve fitting for a bloody lymphodoema, hospital appointments at different hospitals to check out some of the pain, reflexology appointments, new Cancer Centre induction appointments, psychologist appointments, relaxation appointments….and on and on it goes. In some ways, it’s nice not to be left alone to sit and wonder and I know I’m more in control of the appointments than I let on but phew! It takes my breath away sometimes to think of how much work there is in getting…different, back on track, re-connected. There are also appointments for cake, dragon boat racing, singing and for re-connecting with the world of work.

When I finished my last bout of chemotherapy in December, I thought I would be ready to go back to some kind of work by the end of March. How wrong I was. A couple of weeks ago I was feeling bad about not feeling up to it and talked to my cancer nurse specialist at Maggie’s. She looked incredulous (in a nice way). “It’s way, way too early to be thinking about that” she said which was quite reassuring. I had it in my head that the treatment phase (which lasted for 9 solid months, not counting the Herceptin) was the toughest bit and that after that I would be up and at ‘em shortly after. I didn’t expect the recovery phase to be equally tough, albeit in a different way, and equally long. You live, thankfully, and learn.

Image

Share

A teen deals with leukemia – guest post

Back at my desk, answering my email.  One remarkable letter came from 16 year old Serena Bonneville, writing from British Columbia.  Serena is newly diagnosed with ALL.  She just started writing her blog in early October.  She has startling insight and a gift for words so it is worth going back to the beginning of her blog to see how one 16 year old mind is coping with illness and life.  Serena writes at Change of Perspective

Andria

Appreciating the Little Things

Food tastes SO good.
Almost 3 weeks into my chemotherapy and food, amongst other things, has been quite the highlight for me. I’m currently taking 8 drugs a day. 4 in the morning, 4 at night. During this phase of chemotherapy, one of these drugs is a powerful steroid known as Predinsone.
Predinsone: (Pred- ni-sone): A synthetic corticosteroid drug used to treat the symptoms of low corticosteroid levels: lack of certain substances that are usually produced by the body and are needed for normal body functioning. Thanks to Predinsone, the thought of a Triple O’s Spicy Ultimate Chicken Crunch burger leaves me drooling every night and when I finally indulge in a long-awaited salty meal, the magnitude of satisfaction consumes all other customary senses. Flavours are louder, textures are sharper, and sensations are heightened with each bite. Consider my perspective on food changed.
In a world that’s constantly changing every day, it’s easy to get lost along the way. Life moves fast. Like Ferris Bueller so brusquely puts it, if you don’t stop and look around once in a while, you could miss it. It’s an insightful quote to think about but in reality, implementing Ferris’s adventurous, spontaneous lifestyle has always seemed impractical with such a fast-paced life.

 

But perspectives change and with the outlook I’ve recently assumed, this quote is more than just a witty line from a once handsome Broderick’s. It’s become a reference much more relatable to me in this new reality: living life to its full purpose and taking advantage of each moment. And don’t think you have to be experiencing a life threatening disease, or be skilfully faking one like Ferris, to justify an appreciative lifestyle.  It may seem unfair and trivial of me to convey such an idealistic opinion (especially when just a couple weeks ago I was lost in a hectic, non-stop schedule like everyone else) but now, with the concentration and attention span of a sloth, I’ve grown ignorant to contemptuous routine worries. I’m realizing, finally recognizing with Ferris, that buried underneath these trivial distractions are lifes’ simplicities, waiting to be valued and appreciated: like the explosive flavours of a Triple O’s Ultimate Chicken Crunch Burger. With extra fries.
Breeding Optimism,
- Serena Bonneville :)
Share

Cancer Petition: Clothing Line at Target

Editor’s Note: Go to this address to sign petition:  Petition | Keep Talia Castellano’s legacy going by getting her clothing line “Bald Chick Collection” put at Target | Change.org

Keep Talia Castellano's legacy going by getting her clothing line "Bald Chick Collection" put at Target

Keep Talia Castellano’s legacy going by getting her clothing line “Bald Chick Collection” put at Target

    1. Linnette Betancourt
    2. Petition by

      Linnette Betancourt

      Hialeah, FL

Talia Joy Castellano is a 13 year old girl with a bubbly personality. She had Neuroblastoma, a form of childhood cancer since the age of 7 years old and she also had MDS pre-leukemia. Unfortunately, Talia passed away Tuesday July 16 2013 at 11:22am. Talia’s love and light brought people together from all over the world, all races, religions, genders and all ages. Let’s help get her clothing line  ”Bald Chick Collection” at Target. She has gone through so much in her life and the one thing she wanted to accomplish is putting her handprints and footprints on this world.  She deserves nothing less than getting her dream come true!!

 

Share

Cancer: Lessons about Talking – guest post

We only get a small number of blogs from pancreatic cancer survivors.  The disease is usually not caught until late stages.  Things move fast.  Seldom time to stop and put your thoughts down on paper.  I am especially thoughtful about this since my own recent brush with the possibility of a pancreatic cancer diagnosis.

Kathi Instone, mother, grandmother and newly diagnosed cancer patient writes at: A Last Journey – Welcome

My experience with this cancer is limited.  It’s only been a few months since my diagnosis but there are some things I’ve learned. One thing is that time plays tricks  and a few months can seem like forever.  The opposite is also true, forever can pass in the blink of an eye.

As I go to chemo and now radiation,  I realize that I’m seeing the same people.  Montefiore is a big place, with many, many people with cancer. And yet it seems like we are a very small group. We greet each other, or we smile that knowing smile, “well, here we are again”.   Maybe we only see each other as one drifts in to register and the other drifts out having finished the treatment for the day. But we recognize each other. 

Some times we have  time to talk while we wait together. Like today. As I sat down to wait my turn with the big machine I recognized a woman who is usually accompanied by either a younger woman or an older man. Today she sat alone.  Tall, she was almost bent in half, head resting in her hands, almost touching her knees.  We smiled that knowing smile and then she  began to speak. “We all have something in common here, don’t we”?  This cancer brings us together, it doesn’t discriminate, it doesn’t care who we are.”  Her words almost sounded like questions, she was uncomfortable sharing her thoughts but at the same time compelled to get them out of her head.  Then she looked down at her hands and said, “it helps me to talk about it.”  Again, sounding like a question, apologizing for burdening someone else with her thoughts.  ”It’s important to talk” I said, “it lets you know that you’re not alone.”  Her eyes got wide, “yes!” she said.   Then she was called in for her treatment and our time together was over. So much had just happened in that short conversation. She worked through her discomfort to reach out.. And I realized that just a few words shared between two people can be enlightening and comforting to both. I felt good that I had said the “right thing” and that she appreciated our shared understanding. 

I’ll see her again, I know. Maybe I’ll even learn her name, but it doesn’t matter. We share something very big. 

from: A Last Journey – Welcome

Share